1) What is your connection to epilepsy/seizures? My daughter Hailey, 4 years old has generalized epilepsy.
2) Tell us a little bit about your journey. Hailey had he first seizure when she was 18 months old. It lasted more than 15 minutes, and as we found out this is how all of her seizures would be. It was the absolute scariest day of my life. After some time of misdiagnosis and wrong medications we found a neurologist that said she has abnormal activity in both frontal lobes of her brain and diagnosed her with generalized epilepsy. He put her on keppra and phenobarbital and ever since her seizures have been controlled and she has been seizure free over two years now!
3) What is a typical day like for you? We are very fortunate that Hailey is able to live her life just like any other child her age. She is required to bring emergency medicine with her everywhere she goes (rectal diazepam 10mg) because she has never come out of a seizure on her own and every one has required a 911 call and emergency stay.
Hailey wakes up every morning and takes keppra at 8:30 and again at 6:30pm, she also has phenobarbital in the evening mixed with her chocolate milk. She does very well with her medicines and she knows she needs to take them to keep her brain healthy ❤️ Other than that, our day is as normal as possible! We are lucky enough the E hasn’t interfered for two years now!!
4) What support do you have?? My husband and I are each other’s biggest supporters. It has been such a hard journey at times. My mom has also been a huge support system for me. We are also lucky to always have my sister in law there for us to help watch the kids if we need something or just to talk to. Our babies have a lot of people who love them ❤️
5) What would you like others to know? That there are soooo many different kinds of epilepsy. The scariest thing about my daughters types of seizures is that she has NEVER come out of one on her own. Which of course increases her risk of sudep amongst other issues. It’s scary. Not all seizures look the same. It’s not a cookie cutter condition.
6) What has or would make a difference for you? The SAMiAlert monitor we were granted from the Chelsea Hutchison Foundation was huge for us! It meant allowing my daughter to finally sleep in her room and giving her the independence she deserved!
My daughter has been on the right medicine now for a while and has kept her seizures controlled which is the best news anyone could hope for! If everything stays on track at her next appointment we will start weening her off her meds ???